Disability doesn’t mean that I have to be grateful for a relationship

‘He’s such a saint,’ said a family friend while patting my boyfriend’s shoulder at a party.

I sat in my wheelchair trying to keep my cool. It wasn’t the first time I’d heard this, and I knew it wouldn’t be the last. Even when I used crutches, previous boyfriends had been called ‘diamonds’, and ‘angels’ by everyone — from family members to strangers in doctors’ surgeries. 

It’s always made me feel like a burden. People seem to think my boyfriend is missing out on a life with a non-disabled partner. To outsiders, it seems like all I have to offer is my disability — when the reality is that I have a personality, too.

I met Ian, my boyfriend, almost nine years ago online. As soon as we started talking, I told him that I was disabled, suffered from chronic pain and often had to use mobility aids. At the time I didn’t use a wheelchair.

He didn’t hesitate when I told him about my condition. I have hypermobile Ehlers-Danlos Syndrome, Fibromyalgia, Mast Cell Activation Syndrome  —  chronic pain, dislocations, chronic fatigue and severe allergic reactions are all part of my daily life.

All that mattered was that he said he liked me. I loved how honest he was. He recognised my struggle but that didn’t factor into whether he wanted to be with me or not. He was understanding and saw me for me — and I loved that.

He also shared that he believed he was autistic but didn’t have an official diagnosis. He was kind and I felt safe with him. I knew straight away I’d met a good one.

Previously, a boy who I was dating left me at a train station seven hours away from home. Why? He was annoyed by my pain. My use of crutches slowed him and his holiday down.

He despised the fact that I was different, leaving me terrified of getting close to anyone else. It made me so scared to tell Ian about my disability.

We spoke online for three months before meeting each other. Two years after that initial meeting Ian and I were living together in Northamptonshire. I was a part-time wheelchair user, and it was he who encouraged me to use it as he recognised how it would make a difference to my life. We could go out more, stay out longer and I wouldn’t have to struggle quite as much.

So many health professionals discussed wheelchair use in the past, but I was too scared, stubborn, and anxious. At the time, I viewed it as admitting defeat when in reality, it was giving me back my independence.

It took me a few years to get used to using one; I thought that people were always judging me. As an ambulatory wheelchair user, when I needed to stretch my legs, I would go to a disabled toilet so nobody thought I was faking my disability.  

The last few years, I’ve only ever loved it. I don’t care if people see me stand or walk from my wheelchair. Disability isn’t linear — more people need to understand that disabled people use wheelchairs for a lot of reasons.

Ian changed everything for me. He puts me and my health above everything else, but we knew being together would be challenging. I require a lot of care, and no two days are the same. My health is very unpredictable, so Ian does everything for me. He washes and dries my hair, helps me get dressed, cooks our meals, and so much more.

Ian’s role in our relationship is very different to mine. What a lot of people don’t realise is that with Ian being autistic (he was officially diagnosed three years ago), my responsibilities include a lot of admin: sorting our finances, arranging appointments, reminding Ian of things.

When Ian is praised for ‘taking me on’ as a partner or when I’m told that I’m lucky to have him, I feel confused and overlooked. He does a lot of the physical labour, but I have my role too. The sad reality is that people don’t realise it. They don’t witness our daily life together so are unaware of what we do for each other. I don’t want recognition; the same way Ian doesn’t want it for aiding me – but physical labour is definitely congratulated more than mental labour.

Ian always thanks me and is appreciative of everything I do but outsiders have no clue.

Society has a very fixed view on being in a relationship with a physically disabled person. They see me as constantly relying on Ian to do something for me while not being able to comprehend what I do for him.

Yes, he is my full-time carer, but he does these things for me because he loves me. To me, it’s the same as how in non-disabled couples, one person may cook all the meals and the other does the grocery shopping or cleaning. 

Our relationship is balanced. He isn’t playing some superhuman role. The fact that society views our relationship that way makes me worry for my community because there is an implication that disabled people are lucky to find love as opposed to being as deserving as everyone else. 

We don’t need to be saved. We want healthy, happy, loving relationships just like anyone else. My boyfriend isn’t a saviour — he’s with me because he loves me, and I just so happen to be a wheelchair user.

A few of my disabled friends also have similar experiences to mine. Their partners are also being complimented and painted as selfless individuals. It’s as if disabled people shouldn’t expect love. 

This perception makes me sad because it implies that a disabled person is starting from a less deserving place and should be grateful that someone is giving them the time of day.

We have value for being ourselves, and we do not have to contribute physically to our relationships to be viewed as worthy.

It also makes me question, are we so used to people mistreating disabled people that when someone loves them, they need to be put on a pedestal? That certainly needs to change, and the next person who celebrates Ian for being with me will be challenged — I would politely ask why they think Ian is deserving of praise. Do they see all disabled people as burdens to their partners, and if so, why?

It’s an outdated attitude. My worth is not determined by my mobility, and although Ian is an absolutely amazing man, he’s still human, and so am I.